April 19th- 20 Days Old

So the last few days of Samantha's Journey has been tough. We were finally able to come home from the hospital about 10 days ago and we only had a few minor problems until this past Saturday night. Travis had been on call and had worked most of the night on Friday and all day on Saturday so it was just the two girls home with me on Saturday night. I was feeding Sam and when I went to burp her I noticed that the side of her head where the shunt is was soaking wet. I first thought that she was just sweating on that side until her whole head dried up except from the shunt site behind her ear. As I was watching it I realized that her site was leaking clear fluid. After calling the doctors they told us to go to the ER at Baptist. On our way down to the hospital I was really upset with the thought that we would be sitting in an ER waiting room with all kinds of germs on a Saturday night. I asked Travis to pray with me that they would be able to get her back quickly so that she was around a very limited amount of germs. To our surprise there was a Children's ER at Baptist. When we got in they told us that it had only been open since Monday. WHAT A BLESSING! We were sent straight back and had several tests done. It is very hard to watch your infant child being stuck for an IV several times with them screaming. Then they did X-rays and an MRI. They determined that everything was okay and that it might have been a pocket of cerebral spinal fluid left from the surgery and glued up the spot. So we went home about 5 in the morning thinking that everything would be okay. It was until about 11 o'clock on Sunday night. She got extremely fussy and starting running a low fever. I woke up Travis and we decided to watch it. After it kept going up we called our doctor again and we headed down to the ER. At first they didn't think it had anything to do with her shunt.... then a few hours later a test result from the night before came back positive with bacteria cultures in her cerebral spinal fluid. The next thing I know they were moving her up to surgery to get the shunt removed. So that is where we are now. They removed the first shunt, added an external drain and a central line. Right now her cerebral spinal fluid is getting drained from her brain into a bag that has to be level beside her head. There is a manual valve so when she gets raised above a certain level it has to be stopped so all of her cs fluid doesn't run out of her head. They are taking cultures on this daily and she is getting pumped with a massive amount of antibiotics. Once they get a negative culture back, they will wait for two weeks and then they will place another internal shunt. So we are here at the hospital for at least 3 weeks. Yesterday morning we had another scare because the infection caused her fever to spike to 103.4 and she actually had a seizure that was due to the fever. She has now been 24 hours without a fever but she has been on Tylenol and Motrin constantly. The hardest thing is that we are limited to the times we can hold her. It is very hard to watch her just lying there in bed not being able to pick her up. I am praying that we can get this infection cleared up quickly and that her new shunt will not have any problems. I am also praying that we will not need to put a second shunt in the 4th ventricle. This was something we have been waiting and watching and will be for the next several months. If she has to have a second shunt placed.... it is just a higher risk of infection and doing this routine once again. Thanks for all your prayers and support for our Sam. We are trying to count our blessings each day to keep us grounded and in check. You are all part of the blessing that we remember each day. I am so thankful for Samantha's Prayer Army!